Short version: I had planned surgery back home in Ohio, which went extremely well. Ten days after that operation, I was admitted to intensive care for four pulmonary embolisms and bilateral infarct. I was in the hospital for eight days, during which time I had a filter fitted to my vena cava to catch any future clots which might otherwise reach my lungs, heart, or brain. I learned that I have a genetic blood disorder that makes me very prone to such clotting, which I will have to manage for the rest of my life (no more tackle football on the weekends – dang!) but which may not ever cause me another serious problem.
Upshot: I am extremely lucky to be alive.
Long version: I was fortunate that my best friend of 20 years was taking care of me after my first surgery. She is a registered nurse of more than a decade, and thought nothing of all the work she was doing to keep me well during my recovery. I couldn’t shower unassisted, get in and out of bed without help, or do much of anything for myself – she did more than I can list (or will list, because I do have SOME sense of what constitutes TMI).
On Thursday the 29th, when I started having pain while breathing, Karri pushed me to call my surgeon and go for a chest x-ray. I told her not to be silly, and instead slept sitting straight up in a chair because it hurt so badly to breathe unless I was upright – as if my ribs were breaking. At her insistence, I called my surgeon the next morning and told him my symptoms. He urged me to get a chest x-ray immediately. I told him I didn’t think it was anything serious and that I was feeling better (because I wasn’t lying down, duh). Instead, I spent Friday doing what I considered “strength building” after my surgery: cooking, doing laundry, and going up and down the stairs to get myself back into action.
Friday night, after a long day of work at the hospital, Karri came home and noticed that I was pausing frequently while speaking, just to catch my breath. I told her that I was also out of breath after climbing the stairs, which is not normal for me, but put it down to post-op recovery. Karri rarely tells me what to do, but when she does, I listen. Her command: “Call Dr. X right now.” I asked if she would speak to him instead. “No. He needs to hear what you sound like.” The doctor listened to me and got very quiet for a good 20 seconds. “Put Karri on the phone,” he said.
Within minutes, we were on the way to the ER at the hospital where Karri works. We had multiple hospitals to choose from, but figured that her familiarity with the system and staff might come in handy (boy, did it ever). I was still blowing this off as overreaction as we drove, but when I tried calling my father and couldn’t reach him, I lost it. I was terrified, and Karri reassured me that whatever was happening, we’d figure it out soon and I’d be okay.
Friday night in the ER didn’t sound like fun, but I was seen within ten minutes of our arrival. Ten minutes after that, they’d drawn my labs and sent me back for a CT scan. Fifteen minutes after that, the ER doctor came in with a look on his face that I couldn’t read.
Doctor: “Your CT scan came back positive.”
Me: “Positive for what?”
I really thought he meant “positive” as in “nothing is negative”. But he replied, “You have four blood clots in both lungs, as well as infarct.” He then explained that infarct meant that some of my lung tissue – from both lungs, I later learned – was dead, just as heart muscle dies in a heart attack.
At some point, Karri had grabbed my hand. I looked at her, and she was so calm. (Later, she told me she was barely holding it together because she knew I needed her to be strong just then.) Karri just nodded to me reassuringly and asked the ER doctor questions while I spaced out a little. Then she asked me if I wanted to be moved to a hospital closer to my surgeon’s office, so he could see me more easily. Yes, please.
“I don’t think you understand how serious this is,” the ER doctor responded. “There is no way we’re moving you anywhere. It’s too dangerous.”
Karri called my father and told him what was happening. Then she told me she was going to call her parents to update them and would be right back. Her mother told me today, “Yeah, that’s when she called me and started bawling.” Unfortunately, by ignoring Karri’s professional advice and waiting so long to go to the hospital, I put myself at grave risk. If I’d have died – as most PE sufferers do – she would have had to deal with that. I will always regret putting that “What if?” scenario in her head by being so stubborn. In the ER, she knew that I was in danger, while I had just enough of an idea to be scared. I reached out to friends on Facebook and via text, my embarrassment of asking for support being trumped by the fear that was setting in. Karri stayed with me in the ICU until 3AM, when I begged her to go home and sleep. I was out of it on Dilaudid by that time anyway, such was the pain of breathing.
I’m 34 years old and, as my past two annual check-ups have stated, pretty healthy. I have never been a smoker. I have a heart murmur, but my doctors stay on top of it and remain unconcerned after further testing just weeks ago. How does this happen?
We pieced together a plausible theory over the next couple of days. Via Facebook, two cousins tipped me off that I should be tested for Factor V Leiden, a blood disorder that makes blood hypercoagulant and is definitely present on one side of my family. A DNA test showed that I do have that. An ultrasound of my legs was performed when I was admitted to the ICU, showing a clot in my left leg that runs from my knee to my groin. This probably built up over the multiple flights I’ve taken this year (Ireland twice, London four times, South Africa, Sierra Leone, Russia, Israel, Spain, several jaunts to and from the west coast). Sometime after my surgery on September 20, four pieces broke off the larger clot and traveled into my lungs.
So I spent the next week in the hospital, on total bed rest for the first five days, waiting for my blood to thin enough for me to get out of bed and eventually leave safely. The Factor V Leiden made me resistant to the blood thinners, and each day passed more slowly and depressingly than the one before it. I lost count of the number of people who called, emailed, texted, DM’d, sent me FB messages, or otherwise supported me online. On days when I could face more than just my dad, stepmom, brother, and Karri, I had wonderful visitors. I got flowers. While I was barely lucid, friends dropped off toiletries, candy, cards, and other gifts to make things less trying, sticking around long enough for me to thank them but not so long to exhaust me unnecessarily. My brother tapped into my need to be productive by bringing his homework in with him during one visit. Friends sent care packages from as far away as Poland. I felt very cared for, which I needed, having never been in the hospital and certainly never having been stuck on bed rest. Sure, it was a huge private room in a western hospital with excellent staff and facilities – and I’m so thankful that it was. But I wasn’t prepared for just how upsetting a hospital stay could be. I was overwhelmed by the support of friends, some of whom I hadn’t seen in more than a decade, and my family. I’m still a little sheepish about how much I relied on them to boost my spirits, but I don’t want to think about how much worse it would have been if I hadn’t let myself be that weak.
That said, I’m glad this unfolded the way it did, for a few reasons:
1) I was with Karri. It took her and my surgeon a full 24 hours to convince me to go to the hospital. If I’d been at home in NY when these symptoms came up, I’d never have gone – especially not on a Friday night. As my admitting nurse put it, “Most people’s pulmonary embolisms aren’t discovered until they’re doing the autopsy.” According to research by the National Institutes of Health, more than twice as many people die of PE each year than die from AIDS, breast cancer, prostate cancer, and car accidents combined.
2) Factor V Leiden is something you really want to know you have. If you’re injured, medical staff need to know you have it so that they can treat you accordingly. (How I wish I’d known I had it prior to my surgery!) It puts women at significant risk of miscarriage and stillbirth. My children will need to be tested for it, too.
3) Again, I was with Karri. She was my fierce, unrelenting advocate and always-on-call adviser when I was making decisions about my care, whether to have my filter fitted, which surgeon to request, and so on. When I was nauseous from pain medication and nurses weren’t responding quickly enough, she marched out of my room and got them in there to do so. When told I’d need to have my blood tested every day upon release from the hospital, she helped me figure out the logistics of doing that and coordinating my Ohio doctors with my GP at home in New York. After working her long shift in the cath lab, she’d come to my room to change my surgical dressings herself, because I only trusted her to do it. Once I was off bed rest, she helped me shower and brought me good shampoo and conditioner so I didn’t have to use the basic hospital toiletries. She’s driving me to follow-up appointments with my surgeon, to the outpatient hematology lab to get my blood tested, and to the pharmacy to get medicine. She checks on me first thing in the morning to make sure I’m still alive. I can’t even list all of the ways she has been there for me.
I’m prone to say, at least once daily, in tears, “How can I ever pay you back for everything you’re doing?” She tells me, again and again, with increasing exasperation, that that’s not how friendship works. But to say that I will be forever in her debt is an understatement.
So that’s it. You’d think the gratitude I feel would crowd out all other emotions, but no. I’ve been out of the work loop all this time, which has me anxious as hell. I miss New York. I want to get back to my normal life and my reliable routine – albeit with this daily testing and temporary physical limitations integrated.
But I’m also left with a deep sense of awe that I’m still here, and an even stronger sense of wonder for why that is. What am I supposed to do with the rest of this life? We’ll see.